Moving forward
20 years of civil rights act for
Americans with disabilities
The Americans with Disabilities Act,
which celebrated its 20th anniversary
this summer, promised people with
disabilities an equal opportunity to live,
work and play in their communities.
This landmark federal legislation made
it illegal to discriminate on the basis of
disability and has helped reduce barriers
and change perceptions for people with
disabilities as they live their daily lives
and pursue employment opportunities.

MS stops people from moving. The National MS
Society exists to make sure it doesnâ&#x20AC;&#x2122;t. We do this
through our home office and 50-state network of
chapters by funding more MS research, providing
more services to people with MS, offering more
professional education and furthering more
advocacy efforts than any other MS organization
in the world. The Society is dedicated to achieving
a world free of MS. Join the movement at
nationalMSsociety.org.
The National MS Society does not endorse
products, services or manufacturers and assumes
no liability for the use or contents of any product
or service mentioned. Information provided by
the Society is based upon professional advice,
published information and expert opinion, and does
not constitute therapeutic recommendations or
prescriptions. We recommend that all questions and
information be discussed with a personal physician.
ÂŠ2010 National Multiple Sclerosis Society,
Greater Delaware Valley Chapter

MSConnection welcomes letters to the editor.
Send letters to pae@nmss.org or the address above.
Include your name and a phone number or e-mail
address where we can reach you, if necessary. Please
note: we may edit your letter for length and content.

2

JOIN THE MOVEMENT: nationalMSsociety.org/pae

The Greater Delaware Valley Chapter of the
National MS Society is a volunteer-governed
nonprofit organization. We depend on our
volunteer board of trustees to guide the
organization, ensuring that all of its actions are in
the best interests of local people living with MS.
The chapter will hold its annual meeting on
November 18 at the Crowne Plaza Philadelphia/
Cherry Hill, 2349 West Marlton Pike, Cherry Hill,
N.J. This will be an opportunity for members to
meet trustees and staff, hear about the successes
and challenges of the past year and be part of the
required annual business meeting of the chapter.
As in past years, we will conduct the election
of trustees electronically in advance and will
announce the result at the meeting.
Members can nominate candidates to the board
of trustees by e-mailing pae@nmss.org, calling
1-800-548-4611 or sending a letter to:
National MS Society
1 Reed St.,#200
Philadelphia, Pa. 19147
For voting purposes, all attendees must register by
calling 1-800-FIGHT-MS and choosing option
1, 9 a.m. to 7 p.m., Monday to Friday, or visiting
calendarMS.org.

IN BRIEF

New hope
for old
chemo drug
Methotrexate,
a 62-year-old
chemotherapy
drug already used
to treat psoriasis
and rheumatoid
arthritis, may
offer new hope
for people with
progressive forms
of MS, as well.

More than 80% of
people with primary
and secondary
progressive MS
who had the drug injected into
their spinal canal remained stable
or showed improvement one year
after treatments, according to a
recent study.
“We have opened an avenue
of treatment for an otherwise
untreatable form of MS,” said
Dr. Saud A. Sadiq, the study’s
lead author.

FDA panel
recommends
approval of oral
fingolimod
A U.S. Food and Drug
Administration advisory
committee recommended that
the agency approve marketing
of Gilenia capsules (formerly
called fingolimod, Novartis
International AG) for the
treatment of relapsing MS.

If approved, fingolimod would
be the first oral diseasemodifying therapy for the
treatment of MS. The FDA
is not required to follow the
recommendations of its advisory
committees, but it usually does.
According to Novartis, a final
decision about whether to
approve the drug should come in
September.

Brain atrophy may
cause depression
A new UCLA study suggests
brain atrophy may be the leading
cause of depression for people
with MS. This atrophy, marked
by a shrinkage of brain mass,
occurs in the hippocampus, a
part of the brain involved in a
number of functions, including
mood and memory. Researchers
believe this leads to the
development of depression.

Fast track status for
IV alemtuzumab
Genzyme Corporation
announced that intravenous
alemtuzumab has been
designated by the U.S. Food and
Drug Administration as a “Fast
Track Product.” This designation
should expedite its future review
by the FDA after Genzyme
submits results of current Phase
3 trials that are underway.
Alemtuzumab is a humanized
monoclonal antibody directed
at CD52 (a protein on the
surface of immune cells) that is

currently approved by the FDA
for treatment of B-cell chronic
lymphocytic leukemia. Earlier
Phase 2 studies showed that
treatment with alemtuzumab
reduced the accumulation of
disability and the frequency
of relapses in people with
early relapsing-remitting MS,
compared with Rebif.

Protein helps repair
myelin damage
A protein that helps build the
brain in infants and children may
aid efforts to restore damage
from multiple sclerosis and other
neurodegenerative diseases,
researchers at Washington
University School of Medicine
in St. Louis have found. In a
mouse model of MS, researchers
found that the protein CXCR4
is essential for repairing myelin,
the protective sheath that is
damaged in diseases such as MS.

Study measures
functional
performance in MS
Drexel University in Philadelphia
is seeking participants for
a study that examines the
performance of everyday
activities such as using a
telephone, paying bills and
driving in people with MS.
To sign up or learn more, please
contact Maria T. Schultheis,
PhD, at 215-895-6105 or
schultheis@drexel.edu.

TOLL FREE NUMBER 1 800 548 4611

3

President’s message

City to Shore celebrates 30 years
Like most things
involving peanut
butter and jelly
sandwiches, the
Bike MS: City
to Shore Ride
Tami Caesar, had a humble
President beginning. When
news anchor
Larry Kane first
proposed the idea to our chapter, he
simply thought a cycling fundraiser
from Philadelphia to the Jersey Shore
might be a good way to raise a few
much-needed dollars for a cause that is
very dear to him.
It was 1980, nearly 17 years after
Larry’s mother died from the disease,
when the first group of 78 cyclists
rode from Philadelphia to Ocean City
with only one rest stop featuring the
aforementioned PB&J sandwiches.
In 2010, the event will attract more
than 7,000 cyclists, requiring 1,200
volunteers, 200 safety marshals, 24
bike mechanics and five rest stops
stocked with everything from soup to
grilled chicken sandwiches.

4

disease-modifying medications and the
first oral treatment, Gilenia, is expected
to be approved any day now. These
advancements are possible thanks
to investments like the $33.5 million
designated for MS research last year by
the Society
The funding for research is vitally
important, but it can never overshadow
the many ways we help local people
living with MS. Events like City to
Shore made it possible for us to help
Nicole Hanna, a young Philadelphia
woman living with MS. Through our
HomeABLE program we were able
to undertake major modifications
to the Hanna’s bathroom to make it
more accessible for Nicole, increasing
her independence. Programs like
HomeABLE would simply not be
possible without the hard work of
our event participants, volunteers and
donors.

The funds raised has also increased –
the ride on September 25 and 26 is
expected to generate more than $5
million. If it does, the total raised by
City to Shore cyclists over the 30 years
will top $50 million.

On behalf of everyone who has ever
been affected by MS, I want to thank
that first group of cyclists and the
participants every year since for
helping build an event that has had a
truly profound effect on people living
with MS and their families. I know
that cyclists often ride the first time
for the personal challenge. However,
many stay involved because of a
commitment to our cause.

The outlook for people living with
MS has also changed over the years.
Today, there are six U.S. FDA-approved

On that note, I invite those of you
who are not taking part in the event
to join me at the finish line in Ocean

City on Saturday afternoon or at PATCO’s
Woodcrest Station on Sunday afternoon.
Just having people living with MS at the
event to cheer and say thank you is one
of the many reasons that City to Shore
is known as a truly memorable and
meaningful cycling experience.

EDITOR’S NOTE: The safety of all Bike MS
cyclists is the National MS Society’s primary
concern. The need exists to not only protect
younger cyclists, but all cyclists who participate
in Bike MS events.

Tami Caesar
President

To the editor:
This year, children under
the age of 12 will not be
allowed to ride their bikes in
the hugely popular Societysponsored bicycle events.
The Society’s decision was sudden and a huge
personal blow for me and my children, ages five
and seven. My sons have been working for the
last two years on mastering their bikes so that
they could ride with me this year. It is one of the
few bonding experiences that I could physically
share with my kids. I believe that this decision
was not thoroughly thought through, as many
other charity organizations include families with
children in their bike ride fundraisers.
I would like to propose an additional bike ride
that would allow children to continue to feel
part of something bigger, a team fighting a
terrible disease that is destroying someone they
love. They wouldn’t have to be very long – five
or ten miles could easily be set near the end of
the courses in the towns where the rides end.
The Society staff already has the finish line
and post-race party set up. And my sons and I

In 2007, the National MS Society convened a
task force representing a cross-section of the
organization to review existing safety strategies
for Bike MS and to make recommendations to
ensure the continued safety of all participants.
Through careful analysis of industry practices,
and after review of our claims history, we
developed a youth policy to include a minimum
age requirement.
While we appreciate the suggestion that we
create an additional bike ride designed for
families with younger children, our research
has shown limited interest in cycling events on
shorter, closed routes.
Moreover this type of event is much more
expensive to operate and it is simply not
something we can undertake at this time. The
primary reason we stage Bike MS rides is to
raise as many fundraising dollars as possible for
research and direct services for people living
with MS.
We encourage children to continue to
participate in our Bike MS events by
fundraising, handing out medals and other
volunteer activities.
TOLL FREE NUMBER 1 800 548 4611

5

ADA

Continued From PAGE 1
The ADA was intended to provide the kind
of civil rights for people with disabilities that
women and African Americans received in
the 1964 Civil Rights Act, said Steve Gold, a
disability law attorney in Philadelphia.

“Before the ADA,
discrimination
of people with
disabilities was
never talked about
as a civil rights issue
outside the disability
community, and now
it is. That’s a huge
change."

It became clear
by the late 1980s
that a national
civil rights statute
protecting people
with disabilities
was needed, Gold
said, and leaders
in the disability
rights movement
stepped up
the pressure
on the federal
government.

Finally, on
July 26, 1990,
President George
~ STEVE GOLD, H. Bush signed
DISABILITY LAW ATTORNEY the Americans
with Disabilities
Act into law. This legislation established a
clear and comprehensive national mandate
for the elimination of discrimination against
individuals with disabilities.
However, it also contained a lot of
compromises. Only employers larger than
a certain size were required to comply.
Insurance companies carved out protection
against having to cover people with
disabilities. And there was no urgency to
make existing facilities accessible, just the
requirement that new ones should be.
6

JOIN THE MOVEMENT: nationalMSsociety.org/pae

Still, the passage of the bill was a victory for
people living with MS and other disabilities
across the country. And 20 years later,
“the glass is clearly half-full,” Gold said.
“Unequivocally.”
Mark Storey never thought about the ADA
before he was diagnosed with MS a decade
ago, but he now realizes the importance of
public accommodations such as disability
parking spots and ramps, as well as employers
who put an emphasis on helping workers with
disabilities thrive.
Within a year of starting as a software
analyst for Conair Corp., Storey began having
difficulty walking. For a while, he told his new
boss that he had a bum ankle, then he realized
he couldn’t continue making up excuses.
“Finally I told my boss I had MS, and he asked
why I didn’t tell him sooner,” said Storey, who
lives in Glassboro, N.J. “He was concerned.”
As Storey’s difficulty walking grew, his
employer offered to move him to a first-floor
office so he wouldn’t have to climb the stairs
to his department on the second floor. And
his colleagues and managers have made it
common practice to come to Storey’s work
area when they need to discuss something,
rather than requiring him to navigate the
stairs between their two floors.
He’s free to set his schedule around doctors’
appointments, and some vice presidents have
even offered him their parking spots by the
front door. He chooses to park in the disability
spots a little farther away.
“They’re more than accommodating,” Storey
said. “The people here are very good.”
The ADA started the process of changing the
American culture and attitude toward people
with disabilities, Gold said.

But there area still areas where the glass is
mostly empty, Gold said.
Despite Storey’s experience, little progress
has been made in employment of people with
disabilities, he said. Weak enforcement by the
EEOC, coupled with juries who don’t think of
disability as a civil rights issue, has meant that
companies aren’t held accountable for unfair
treatment of employees with disabilities.
Sarah Smith (name changed to prevent her
identity), knows firsthand that employers
have a long way to go and a lot to learn.
When she was diagnosed with MS several years
ago, her boss sent an e-mail to the company’s
entire 150-person staff, notifying them of her
diagnosis. While the message may have been
well-intentioned, Smith found it devastating.

and it basically made me unemployable in my
industry,” she said.
When she returned, some of her colleagues,
unsure of what to say, stopped speaking to her.
The owner has never acknowledged her illness.

ADA

“Before the ADA, discrimination of people with
disabilities was never talked about as a civil
rights issue outside the disability community,
and now it is,” he said. “That’s a huge change.”

“I haven’t asked for accommodations because
I don’t want to show any signs of weakness in
my job,” said Smith, who experiences constant
fatigue. “I don’t want to remind anyone I have
a disability. I sit here and fake it.”
For people like Smith, the promise of the ADA
will only be reached if activists remain focused
and committed to full implementation of the
ADA and to advocating for people living with
disabilities.
People across the spectrum of disabilities –
mental and physical – must band together to
affect positive change, Gold said.
“The glass will never get full unless we develop
a national disability movement,” he said.
“We’ve got to do more.”

“I felt like it was a huge breach of confidence,

ADA Amendments Act:
What does it all mean?
On September 25, 2008, the ADA
Amendments Act (ADAAA) was signed
into law. It became effective on January 1,
2009. The ADAAA makes important changes
to the definition of the term “disability.” The
basic definition remains the same -- an
impairment that substantially limits one or
more major life activities, a record of such an
impairment or being regarded as having such
an impairment. However, it changes the way
the statutory terms should be interpreted.

Of particular relevance to people with MS:
n The definition of “major life activities” has
been expanded to include major bodily
functions including “functions of the immune
system, bowel, bladder, neurological and
brain functions,” to name a few.
n An impairment that is episodic or in remission
is a disability if it would substantially limit a
major life activity when active.
n Mitigating measures other than “ordinary
eyeglasses or contact lenses” shall not
be considered in assessing whether an
individual has a disability.
TOLL FREE NUMBER 1 800 548 4611

7

RESEARCH

GENDER

DIFFERENCES MAY
HOLD A KEY TO MS
While nerve and immune cells are
the primary players in MS, research
into the role played by sex hormones
may offer new opportunities for
understanding the disease and
developing therapies.
“We often focus on one
factor or one cure, but
this is a complex disease
and there may be many
treatments,” said Dr. Dina
Jacobs, a neurologist at the
Hospital of the University
of Pennsylvania studying
the effects of estrogen
on MS. “There may be a
complex interplay among
hormones, and that’s what I
find fascinating.”

rates in women with MS before, during and
after their pregnancies. They found a 70%
decrease in relapses during the third trimester
and a 40% increase in the first three postpartum months, Jacobs said.
UCLA researcher Rhonda Voskuhl realized
that those results correlated with sex
hormone levels, which
rise during pregnancy and
drop precipitously after
childbirth. The swing is
related to changes that
scale back the immune
response during pregnancy
to tolerate the fetus, Jacobs
said.

“Estriol seems to
be a very hopeful
story in MS. We
are really excited
about it.”

Voskuhl’s early pilot studies
testing the estriol form of
estrogen in women with
relapsing-remitting MS
showed a 79% decrease
in new lesions, as well
as improved results in
cognitive tests.

As early as 1893, doctors
~ DR. DINA JACOBS
observed that MS seemed
to begin during pregnancy,
remain static until the next
The concept has now
pregnancy and then become progressively
moved into Phase II clinical trials testing estriol
worse. As a result, until the 1950s, women
in conjunction with Copaxone, with Jacobs
with MS symptoms were advised not to
heading up recruitment at the University of
become pregnant.
Pennsylvania. If successful, this trial could lead
to a larger, definitive trial and a new oral
More recent studies have compared relapse
treatment option for women with MS.
8

JOIN THE MOVEMENT: nationalMSsociety.org/pae

Major benefits to estriol therapy are that it
is taken orally, has fewer side effects and is
far cheaper than current therapies. While it
does carry some of the same risks as hormone
replacement therapy, estriol is a less potent
estrogen than what’s used in HRT and young
women may be at lower risk for these issues,
she said.
Another phenomenon that fascinates Jacobs is
the role of breastfeeding in MS. A recent study
showed that exclusive breastfeeding for at
least two months provided a protective effect
against MS, and that women whose menstrual
period resumed in less than four months were
at an increased risk of postpartum relapse.
Meanwhile, testosterone, a male sex hormone,
also appears to play a protective role against
MS for men.
MS is two to three times more common in
women, with recent epidemiologic studies
suggesting it may be even higher. Men have a
much lower incidence of the disease early in
life, when their testosterone levels are higher,
Jacobs said. But by the time men and women
reach their 40s and 50s, they are diagnosed in
equal numbers.
In 2007, UCLA’s Voskuhl reported that one
year of treatment with a gel containing
testosterone (applied to the skin) in 10 men
with relapsing-remitting MS resulted in
significant improvements in cognitive function
and in slowing brain tissue loss.

men with relapsing-remitting MS. Further
study involving larger numbers of patients
and control groups is necessary to confirm
these early results and to ensure the safety and
effectiveness of testosterone treatment for MS.

RESEARCH

“Estriol seems to be a very hopeful story in MS,”
Jacobs said. “We are really excited about it.”

Back in the lab, Dr. Elizabeth P. Blankenhorn
at Drexel University is trying to separate
the influences of genes versus hormones
in mice with the MS-like disease EAE. She
and her team are digging into the genetic
underpinning of MS, seeking to identify genes
that are responsible for gender differences.
Other potential areas of gender study include
how breastfeeding offers a protective effect,
how menopause affects the course of MS
and further research into testosterone as a
therapy, Jacobs said.
“There are many, many more things to look
at,” she said.

Get involved
Investigators are currently
recruiting women 18-50 years
old with relapsing-remitting MS
who have had at least one relapse
in the past two years. For more
information or to get involved with
the University of Pennsylvania test
site, call Vanessa Zimmerman at
215-349-5162.

This small study shows that testosterone
treatment may have a therapeutic benefit in
TOLL FREE NUMBER 1 800 548 4611

9

RESEARCH

SOCIETIES COMMIT MORE THAN
$2.4 MILLION TO CCSVI RESEARCH
The National MS Society and MS
Society of Canada have committed
more than $2.4 million to support
seven new research projects focusing
on the role of CCSVI (chronic
cerebrospinal venous insufficiency)
in MS.
CCSVI is a reported abnormality in blood
drainage from the brain and spinal cord that
may contribute to nervous system damage
in MS. Reports of success from a procedure
to correct the abnormality have given many
people with MS hope.
All of the recently funded research
applications underwent a rigorous expedited
review process by an international review
panel that included experts drawn from all
key relevant disciplines including radiology,
vascular surgery and neurology. The two-year
grants began July 1.
These new studies are necessary because we
donâ&#x20AC;&#x2122;t yet know whether, or if so how, CCSVI
contributes to MS disease activity. They
will achieve several important goals. First,
the new studies will carry out significant
steps needed to confirm the phenomenon
originally described by Dr. Paolo Zamboni,
who identified the abnormalities, and resolve
the questions raised by him and others as to
whether CCSVI is a cause of MS or related to
MS in some other manner.

10 JOIN THE MOVEMENT: nationalMSsociety.org/pae

Second,
these
studies will
resolve
conflicting
data from
previous
research,
such
as how
frequently
CCSVI
occurs in
MS and
how often
it occurs
in people
who do not have MS. Third, if blockages are
found, the findings will speed the way to
determining whether therapeutic trials to
correct them will be helpful in improving or
altering the MS disease process.
Together, these studies aim to further
understand the role of CCSVI in MS and
identify optimal methods for screening for
the condition, which would be necessary
to determine the next steps required in
advancing this CCSVI lead. They will also be
of value in designing protocols for possible
exploratory therapeutic trials that might be
independently undertaken in North America
or abroad.
For more information on CCSVI, recent
media reports and the Societyâ&#x20AC;&#x2122;s response,
visit nationalMSsociety.org/CCSVI.

Managing the costs of MS meds is a huge challenge, especially for people with no insurance or who
are underinsured. But some help is available. Each disease-modifying drug manufacturer and many
makers of medications that treat MS symptoms have Patient Assistance Programs (PAPs), which
offer free or low-cost medications to those who qualify. Prescription drug discount programs can
help as well. Ask your doctor if there is a generic version available for any prescription.

Services

Need help paying for MS drugs?

Patience may be needed to get benefits, however. You can get support and information from the
Society too. Visit nationalMSsociety.org/underinsured or call us at 1-800-344-4867.
RESOURCE CENTERS â&#x20AC;&#x201D; These centers can help with information, applications and exploring
your options.
Name
Website
Phone Number
NeedyMeds
(online only)
NeedyMeds.org
Partnership for Prescription
888-477-2669
pparx.org
Assistance
RxAssist
401-729-3284
RxAssist.org
For help in purchasing disease-modifying drugs
Drug Name
Resource
Avonex
MS Active Source
Betaseron
BETA PLUS Patient Support Program
Copaxone
Shared Solutions
Extavia
Extavia Patient Support Program
Novantrone
Novantrone Patient Assistance
Program
Rebif
MS Lifelines Access Made Simple
Tysabri
MS Active Source

Call an MS Navigatorâ&#x201E;˘ at 1-800-344-4867 about other drugs or state-supported patient
assistance programs. The information here is not guaranteed to be up to date as programs may
change, but we hope this helps you get started.

TOLL FREE NUMBER 1 800 548 4611 11

SCHOLARSHIPS

Three local students receive Society scholarships
The Greater Delaware Valley Chapter
has awarded scholarships to three
local students through its annual
scholarship program.
The program helps students affected
by multiple sclerosis pursue a college or
technical school education. It is open to
high school seniors who live with MS
or have a parent who does; or anybody
living with MS who has not yet been to
a post-secondary school. Scholarships
range from $1,000 to $3,000 and
typically cover one year.
Information about scholarships
for 2011-12 will be available
on the National MS Society
Web site beginning on Oct. 1, 2010,
and applications will be due by midJanuary 2011. For more information,
call 1-800-344-4867 or visit
nationalMSsociety.org.

Higher Education Resources
n Scholarship guide:
This 22-page guide
helps you identify
scholarships, avoid
scams and navigate
your way through the
complex financial aid
process. It’s available
online only at
nationalMSsociety.org/pae.
n Funding a College Education: Resources to
Make the Journey a Little Less Scary

12 JOIN THE MOVEMENT: nationalMSsociety.org/pae

Congratulations to this year’s
outstanding scholarship recipients.

Kevin Clark, Wyncote, Pa.
La Salle College High School
Plans to attend University of Scranton
as business administration major
Anthony Simonetti, Bellmawr, N.J.
Triton Regional High School
Plans to attend Rutgers University as
education major
Jessica Volpe, Philadelphia, Pa.
Archbishop Ryan High School, Plans
to attend Bloomsburg University of
Pennsylvania as undeclared major
Community services coordinator Jennifer
Kelley will help you feel more comfortable
with finding the means to pay for your son
or daughter’s college education and knowing
which options are right for you. Light
refreshments will be served.
n Saturday, October 9, 10 a.m. – noon,
Location TBD
n Saturday, October 16, 10 a.m. – noon,
Cherry Hill Public Library, Cherry Hill, N.J.

physical therapist
is a health-care
professional
who is an expert in
understanding movement
and why an individual
has difficulty moving
and functioning. PTs
work with clients of any
age with many different
diseases or medical
problems to decrease pain
and improve function and
independence.
A neurologic physical therapist is a PT who
specializes in the evaluation and treatment
of individuals with movement problems and
functional limitations due to disease or injury
of the nervous system. Neurologic physical
therapists understand the ways in which
multiple sclerosis can impact a personâ&#x20AC;&#x2122;s ability
to do the things they desire to do. They are
aware of the impact of fatigue, spasticity,
weakness or balance difficulties on function.
They are able to determine the myriad factors
limiting independence and work with the
client to improve his/her ability.
A neurologic clinical specialist (NCS) is a
neurologic physical therapist with advanced
training and practice in the area of neurologic
physical therapy. In addition to training and
practice, these PTs have passed a specialty
examination of the American Board of
Physical Therapist Specialists and are awarded
the title of Neurologic Clinical Specialist.

Column

Finding the Right PT for you
n The National Multiple Sclerosis Society
provides limited PT services designed
to help maintain or improve functional
independence. Contact the Society for
more information at 1-800-548-4611.
n Outpatient physical therapy: If your
insurance directs you to specific
outpatient centers, call ahead to
determine if that center has neurologic
clinical specialists or neurologic PTs. If not,
ask for therapists who, are experienced in
working with individuals with neurologic
impairment, especially MS and have
rehabilitation experience
n Contact the American Physical Therapy
Association and ask for contact
information for neurologic physical
therapists in your area at
1-800-999-2782, ext. 3237,
www.neuropt.org or www.apta.org
n Contact the outpatient centers associated
with inpatient rehabilitation centers
When you work together with a PT towards
your goals, you will be successful!
Do you have a question for
physical therapist Mindy
Bartscherer? Please send
them to mbartscherer@
yahoo.com.

TOLL FREE NUMBER 1 800 548 4611 13

FUNDRAISING

30-mile journey toward a cure
“One of my proudest moments was
watching him walk up that hill,”
remembered Renie Gowder, whose
husband John lives with secondaryprogressive MS. It was the first time
John had participated in Challenge
Walk MS, and while Renie scooted
up the first large hill on the second
day of the walk, she watched her
husband walk up it. “Just to see him
complete that, I was so proud of
him,” she said, overcome by emotion.

Renie hopes that walking in Challenge Walk
will someday lead to a cure. She says that’s
what keeps her coming back each year. The
money her team has raised has helped pay for
important research, which has in turn led to
new, effective medications – so effective, she
said, that for the past six or seven years, John
has remained “exacerbation-free, for the most
part. I don’t know where he would be without
the medications.”

John was 29 years old when he was diagnosed
with MS in 1983 after six years of symptoms,
Renie said. He dealt with weakness, partial
paralysis and blindness. Doctors told him he’d
probably never walk again without assistive
devices.

Renie and her team have been participating
in the event since 2003. John joined them for
the first time in 2006. “We always did the
one-day walks,” she said, but decided with
John’s ongoing daily challenges that they’d
try to take on the Challenge Walk. Her team,
Curesading Myelinators, is made up of family,
friends and other Challenge Walkers they’ve
met at previous events. “We became very close
friends and embraced them into our little
circle,” she said.

Challenge Walk helps John realize “he’s not
alone out there,” Renie said. He only knew one
other person with MS before participating in
the Challenge Walk, she said, but he’s since
found camaraderie with a whole group of
people he could relate to.

Together, they have raised more than $85,000
for the event. A lot of the money is raised
through a personal letter they write every
year asking for donations. They also have four
poker tournaments a year, beef and beers, car
washes and product parties, she said.
John Gowder with teammate
at Challenge Walk MS 2009
14 JOIN THE MOVEMENT: nationalMSsociety.org/pae

The team has become a staple at Challenge
Walk each year. And they’re easy to find with
their red bucket hats. Her daughter picked out

Renie Gowder with teammates at
Challenge Walk 2009
the hats after the staff advised everyone they
should wear hats during the walk. “Everyone
asked us if we were part of the Red Hat
Society,” she laughed. “Now it’s become our
signature.”
Though at times MS is a struggle for the
whole family, they try to keep a positive
outlook. And they continue fighting for a
cure. “You have to play the hand you were
dealt. You can’t just fold it,” said Renie.

ACCEPT the challenge!
OF A LIFETIME
CHALLENGE WALK is a
two-day, 30-mile journey
through the beautiful
Challenge 2010

Brandywine Valley and
historic Philadelphia. Register

today to walk or take part as a one-day
volunteer or a two-day crew member. Visit
walk4MS.org for more information and to

FUNDRAISING

Chapter honors
Blue Cross CEO
The Greater Delaware Valley Chapter will
honor Joseph A. Frick, President and CEO of
Independence Blue Cross,
with its highest honor, the
2010 Hope Award for
philanthropic service and
community leadership
at the MS Dinner of
Champions on October
22.

In addition to recognizing
the contributions of local
leaders, this fundraising
event is pivotal to the
Joseph A. Frick,
National MS Society’s
President and CEO
vision of creating a
of Independence
world free of multiple
Blue Cross
sclerosis. The dinner is
expected to draw more
than 600 guests to the Crystal Tea Room in
Philadelphia, with a goal of raising $550,000.
Past Hope Award recipients include David
L. Cohen, Nicholas DeBenedictis, the late G.
Fred DiBona Jr., Rosemarie Greco, Bob Hall,
Larry Kane, Eric Lindros, Warren V. “Pete”
Musser, Joe Paterno, Ed Rendell, Mark S.
Schweiker and Ed Snider.
Co-chairs of the 2010 event are David L.
Cohen, Larry Kane, Ira Lubert, the Hon.
Nicholas Maiale and Judith Spires.
For MS Dinner of Champions tickets,
please call 215-271-1500.

register, or call 1-800-883-WALK.
TOLL FREE NUMBER 1 800 548 4611 15

FUNDRAISING

MUD RUNNERS GET DIRTY FOR MS
New event is tremendous success in Newtown Square, Pa.
Runners of all skill levels joined
together to experience an
unforgettable day of fun at the first
annual Mud Run, benefiting the
National Multiple Sclerosis Society.
Hundreds of spectators watched as 939
participants ran, jumped and climbed their
way through 6.2 miles of mud on June 12 at
the Ellis Preserve and Marville Properties in
Newtown Square, Pa.
This event brought out
a new and unique group
of runners. Military,
police officers, fire
fighters, fitness groups,
corporations, college
students and groups
of families and friends
prepared themselves for
this test of strength and
endurance in the weeks
leading up to the event.
The determination to
finish the course was seen
on every runnerâ&#x20AC;&#x2122;s face,
which made this event
even more rewarding for
all involved.
Mud Run
participants
climbing the wall

With Mud Run staff
ambitions set high and
80% of participants
running in a Society

16 JOIN THE MOVEMENT: nationalMSsociety.org/pae

event for the
first time,
the event
surpassed the
$110,000
goal and
raised
more than
$199,200 for
the Greater
Mud Run participant at the
Delaware
final obstacle
Valley
Chapter.
To participate in the event, all runners were
required to raise at least $100 to help support
the mission of the Society.
More than 200 volunteers helped throughout
the 25-obstacle course, which contained boot
camp-style obstacles that were surrounded by
or consisted entirely of mud. Favorites of the
day included Mine Field, Low Crawl and Log
Walk. But it was the Mud Pit at the end of the
course that got participants really dirty for the
cure.
The National MS Society worked in
conjunction with Two Circles, organizer of
premier events including the Dallas/Fort
Worth Mud Run, which celebrated its 10th
anniversary last fall. With the help of the
Societyâ&#x20AC;&#x2122;s Delaware and Central Pennsylvania
chapters, runners were recruited from
the Greater Philadelphia, Southern New
Jersey, Lehigh Valley, Delaware and Central
Pennsylvania areas, as well as through other
fundraising events.

As extremely muddy runners crossed the
finish line, they had pictures taken and
headed over to the festival area, which
included food, beer and sponsor tents. The
Newtown Square Fire Department had
the fun job of hosing down runners as they
laughed and joked about their experiences in
the mud.
With the success of this new Society
campaign, Mud Run 2011 registration
opened the day after the event and is gaining
larger awareness than any first-year campaign
has for the Society.

JOIN THE FUN NEXT YEAR
Register or find out more at
MudRunPHL.com, or save the
date to cheer for the runners on
June 11, 2011.

FUNDRAISING

The first-ever spectators corral was a unique
spot for family and friends to watch their
loved ones slip and slosh their way through
the obstacles while they enjoyed music
provided by media sponsor 94WYSP and
local food vendors.

READaTHON is a hit
for 17 MVP kids
The National MS Society honored 17
elementary and middle school students who
each raised $500 or more in the annual MS
READaTHON at an MVP Awards Program at
Citizens Bank Park.
Four students who each raised $1,000 or
more also had the opportunity to meet
Philadelphia Phillies pitcher Danys Baez.
The MS READaTHON encourages children to
read as many books as they can during a fourweek period to raise funds for the National
MS Society. This year, 45 area schools
participated in the MS READaTHON, raising
$103,000. These funds are used to provide
programs, services and research for 13,000
area families living with MS.

Mud Run team at the finish

Hunter Reese, the top MS READaTHON
fundraiser, raised $2,300 for people living
with MS. He is pictured here with other
students who raised $1,000 or more.
TOLL FREE NUMBER 1 800 548 4611 17

FUNDRAISING

MS HITS CLOSE TO HOME FOR TV ANCHOR
Vaughn dedicates time and energy to MS Leadership campaign

R

ob Vaughn learned the worst that MS
can throw at a family in 2006, when
new lesions on his sister Pam’s brain
caused a severe and rare form of dementia.
“The whole family was in crisis,”
said Vaughn, a popular TV
personality for WFMZ in the
Lehigh Valley. “She couldn’t
care for herself anymore.”
Facing uncharted territory,
Vaughn turned to the National
MS Society for support.
“We really appreciate the help
the Society provided,” he said.
“They gave us a wealth of
advice and materials, steering
us in really positive directions to find help and
understanding of the disease.”

Rob Vaughn,
WFMZ Anchor

He took over his sister’s financial and medical
affairs and took in his nephew after Pam
moved to Florida to be cared for by their
parents.
Two years later, when the chapter asked for
Vaughn’s support of the new Lehigh Valley MS
Leadership Class, he didn’t hesitate.
“I was glad to jump in with both feet because
I think the Society does really good work,” he
said.
He took on the role of chairman of the
corporate fundraising campaign and joined
the first class himself, raising $3,000 to be the
class’s third-highest fundraiser. Many of
18 JOIN THE MOVEMENT: nationalMSsociety.org/pae

his friends knew about his family’s struggle
with MS, and once they heard about what the
Society does, they were happy to contribute,
he said.
In his continuing role as the class’ chairman,
Vaughn takes pride in encouraging others to
get involved in the MS Leadership Class too.
“The Leadership class is a real opportunity
for someone to make a difference in the lives
of other people,” he said. “You can talk to
people you know who are charitably minded
people, and in very short order and without
any difficulty, you can make a real difference
by bringing in substantial dollars to help the
Society.”
The Lehigh Valley is a great fit for a program like
the MS Leadership campaign, Vaughn said.
“People really do seem to have community
spirit and want to help,” he said. “They sense
that they can make an important contribution,
even in economic times like these.”

The Lehigh Valley MS Leadership Class
is now taking applications for 2010
honorees.
The ideal candidate is an upwardly mobile
business professional in the Lehigh Valley. We
ask each honoree to raise $1,000 through a
special gifts campaign for the National MS
Society, and many participants raise even more.
To nominate yourself, a friend, family
member or colleague, visit http://main.
nationalmssociety.org/lvleadership or call
Judi Simmons at 1-800-548-4611.

Many thanks to all of our volunteer fundraisers who are helping
create a world free of MS.

Participants in SPIN,
a nonprofit social
service agency that
supports individuals
with mental, physical
and sensorial
disabilities, raised
$83 this summer
through a soft
pretzel sale at the
Norcum Community
Center in northeast
Philadelphia. The
pretzels were donated
by Thorne Green,
owner of A Taste of
Philly in Dresher, Pa.

They held the fundraiser as their final project
in a course that emphasized giving back and
educating the community that people with
disabilities have a lot to contribute, said
instructor Katie Clancy.
Class members considered a range of projects
and causes, but ultimately were inspired by a
member of the class whose sister has MS, she
said.
Ellena Kirschbaum and volunteers at
the Pocono Speedway raised $3,000 by
volunteering for the Poconos 500 on June 4, 5
and 6.

FUNDRAISING

Community fundraising all-stars
Volunteers from
LSI helped residents
of Phoebe Home,
a nursing home
in Allentown, Pa.,
raise $400 and MS
awareness through
a “Rollathon.” As
part of LSI Volunteer
LSI volunteers
Day, 39 volunteers
push Phoebe Home
pushed residents
residents in the
around the facility’s
Rollathon.
grounds, followed by
refreshments, a presentation and entertainment.
Altogether, 156 residents, volunteers and
Phoebe staff were involved in this special event.

South Jersey
lifeguards raised
$4,000 in July to
benefit the Society
through the 17th
Annual Upper
Township Beach
Patrol MS Six-Mile
Bay Row. Crews of
lifeguards rowed Van
17th Annual Upper
Duyne surfboats six
Township Beach Patrol
miles in the back bays
MS Six-Mile Bay Row
near Strathmere, N.J.,
with the Deauville Inn
packed with hundreds of fans and supporters
of their favorite crews.
TOLL FREE NUMBER 1 800 548 4611 19

TOP 5

tips for finding a job
Finding a job in this economy is a difficult
task. It can be even harder if you have been
out of the work force for an extended period
of time and/or have any disabilities. That’s
where the Greater Delaware Valley Chapter’s
MSWorks service comes in. Employment
Services Manager Christina Forster, MA,
CRC, is available to help you with every step
of the job search process, including résumé
development, practice interviews, career
exploration, job search techniques and more.
Here are her top five tips for finding a job.

1. Know yourself. This tip may seem

obvious, but many people start a job
search without any idea what they are
looking for and what they can offer.
Think of all the skills you have to offer a
potential employer and how they apply to
the position for which you will apply. Are
those skills transferrable to other industries
as well? You should also know what kind
of position you’d like to hold. You may
know that you want to do something in
the health-care or construction industries,
but what specifically would you like to do?
Figuring it out before searching for jobs
will save you a lot of time.

2. Develop your résumé. The key to getting

a call back for an interview is a good
résumé. Forster’s advice is to tailor your
résumé for the job you’re applying for.
Don’t just send the same thing to every
company. Each employer is looking for
different skill sets and experiences. Read
the job description thoroughly to find out
what skills, education and work history the

20 JOIN THE MOVEMENT: nationalMSsociety.org/pae

employer is looking
for. Highlight all
of the ways you fit
their description
in your résumé.
Include volunteer
work and the
skills needed to
complete that
work in your job
history if it has
been a long time
since you have had
a paying job.

3. Network. According to Forster,

networking is one of the top ways to find
employment. Sometimes getting a job is
about who you know, she said. You can do
this online with sites like LinkedIn.com,
specifically for professional networking,
and Facebook.com, the largest social
networking site. If you’re not comfortable
with creating a public online profile, you
can network anywhere you go just by
striking up a conversation. Attend business
card exchanges and networking happy
hours every chance you get.

4. Know where to look for a job. Forster

recommends starting at MSWorks.org.
The site has links to companies that are
currently hiring, as well as links to various
job search sites. Some of the sites are
specifically catered to connecting people
with disabilities to accommodating
companies. If you don’t have Internet
access, Forster suggests you go to your
local public library to use their computers
or take advantage of the services offered
at CareerLinks centers and state vocational
rehabilitation centers.

5. Keep at it. Especially in this economy, it

MSWorks doesn’t stop at helping you find a
job. The service is also available to help our
members with job transitions, Social Security
Disability issues, disclosure, advocating for
accommodations and so much more.

NEWS

can take weeks or months to land the job
you’re after. It’s important to stay positive.
Social supports such as Social Security
Disability Insurance are a last resort, not
a back-up plan when the employment
market looks bleak. Forster said she always
tells people to “keep plugging away.”
Searching for a job is now your full-time
job, she said. And if you need help with
any part of the process, take advantage of
the chapter’s MSWorks services.

To learn more about this service, contact
Christina Forster at 1-800-548-4611, ext.
141, or visit MSWorks.org.

INGLIS RECEIVES
SOCIETY DESIGNATION

I

nglis House, which provides programs
and services for people with physical
disabilities, has been designated by the
National MS Society as a Center for the
Promotion of Excellence in Long-Term Care.
The Society recognizes community-based
programs and facilities that address the longterm care needs of people with MS as an
integral part of their mission. Nearly half of
the 297 residents at Inglis House, a skilled
nursing facility in Philadelphia, have multiple
sclerosis, as well as hundreds of Inglis consumers
living independently in the community. They
receive consumer services including community
employment, adult day care, care management
and accessible housing.
Besides serving a significant number of
people with MS, Inglis House also has a
strong working relationship with the Greater
Delaware Valley Chapter and currently
has 40 staff members enrolled to receive
recognition as MS Certified Nurses and
Certified Specialists (licensed therapists) from

National MS Society staff present Inglis House
with the designation as a Center for the Promotion
of Excellence in Long-Term Care: (left to right)
Karen Mariner, Gavin Kerr, Timothy Murphy,
Ellen Mitchell, Tami Caesar and Kathie Cronk
the Society. Inglis House engages in a range of
activities to promote excellence, serving as a
site to develop models of innovative care and
providing leadership in disseminating best
practices for providing MS care.
Inglis Foundation joins eight other programs
around the United States that have received
this designation, including Good Shepherd
Rehabilitation Hospital in Allentown, Pa.
TOLL FREE NUMBER 1 800 548 4611 21

ADVOCACY

MS Activists make voices heard

T

he highly anticipated MS Lobby Day was
a complete success. Activists met new
people from other parts of New Jersey,
had an opportunity to speak with legislators
and had the chance to witness and listen to
what legislators are doing for the community
of people living with disabilities.
The MS activists were pleased to have 10
elected officials and several government
officials come to speak with them. Officials
included Assemblymen Herb Conaway Jr.,
Anthony M. Bucco, Federick Sclera and
Louis Greenwald; Assemblywomen Charlotte
Vandervalk, Pamela Lampitt, Mila M. Jasey
and Cleopatra Tucker; Senators Diane Allen
and Fred Madden; and government officials
Joseph Amoroso and Pamela McCrory.
Assemblywoman Vandervalk surprised the
activists by disclosing that her son has MS and
that he is her main inspiration for her fight to
provide housing for people with disabilities.
She also informed attendees about several new
housing projects, including a new building
containing 40 units
which will be built
primarily for people
with disabilities in
Bergen County.

Furthermore,
Assemblyman
Conaway
emphasized that
On the bus to Trenton,
he wants to make
N.J. for Lobby Day 2010
sure that the healthcare system works
for everyone. As he answered questions and
talked with the MS activists, Conaway became
interested in the vast difference between drug
22 JOIN THE MOVEMENT: nationalMSsociety.org/pae

tier co-pays. He wasn’t familiar with the issue
and assured the attendees that he would look
into it.
Moreover, many activists were pleased to hear
from Senator Fred Madden about his approach
to legislation.
Madden said that
BREAKING NEWS:
each year, he tries
to pick a disease
Senator Fred Madden
or an organ that is
introduced the New
impacted by illness,
Jersey Multiple
educate himself
about the condition Sclerosis Task Force
and work to make
Bill (S2212) on August
positive change for
23, 2010. For the
people with that
condition. He said
latest information, visit
he will concentrate
MSActiveNJ.org.
on developing
legislation to
provide support for people living with MS and
funding to help find treatments and a cure.
The activists also learned about current and
prospective programs and services in New
Jersey from Joseph Amoroso, administrator
of information and assistant services of the
Division of Disability Services (DDS). He
addressed disability parking issues, saying the
government was trying to place tighter limits
on the number of tags issued, and handed out
copies of “New Jersey Resources 2010.” To
receive a copy of this reference book, which
provides information about various resources
available in New Jersey for people with
disabilities, call DDS at 1-888-285-3036,
then press “2” and “0” in the menus.
All in all, MS Lobby Day was a huge success.
Several legislators, including Madden and
Greenwald, praised the MS activists’ efforts

Do you want to:
n get experience in grant writing or project
management?

Volunteers

Beef up your resume as a volunteer

n enhance your customer service skills?
Pamela McCrory at Lobby Day 2010
and reported they were doing as much
as they could to provide funding for
the community of people living with
disabilities. The activists’ hard work
and determination to live life without
letting MS affect them was inspiring,
Greenwald said. And he and other
legislators all placed heavy emphasis
on encouraging people with MS to get
involved in the political process and let
their elected officials know when they
need help.
Contact the National MS Society at
1-800-548-4611 if you have any
questions or concerns pertaining to:
n Assemblywoman Charlotte
Vandervalk’s housing projects
n Assemblyman Herb Conaway’s
plans to research the drug tier
issue (see next page)
n Senator Fred Madden’s plan to
focus on multiple sclerosis
n Joseph Amoroso’s plan to deal with
handicapped parking issues and
the New Jersey Resources 2010
Guide
n How to become an activist for MS

n keep your administrative or bookkeeping skills
fresh?
Then look no further than the Greater Delaware
Valley Chapter. We have a wide range of volunteer
opportunities available for professionals of every
level and industry.
In this difficult economy, it’s more important than
ever to keep your skills and resume current. Plus,
volunteering is a great way to learn new skills that can
help you make the transition into a new career.
Get started by filling out our volunteer interest
survey at www.surveymonkey.com/s/
GDVvolunteersurvey, and visit http://main.
nationalmssociety.org/volunteer to see some of our
open volunteer positions.

New focus for chapter programs
The Greater Delaware Valley Chapter is taking a
more community-based, grassroots-driven approach
to the educational programs we provide.
What does that mean for you? More resources for
enriched programs at a self-help group near you,
more teleconferences that make it easy to learn from
the comfort of your living room and more access
to programs being held by our partners in your
community.
We’ll be able to devote the money we save on big
hotels and meeting venues to funding research and
direct services – investments that will help make
your life better now and in the future.
TOLL FREE NUMBER 1 800 548 4611 23

ADVOCACY

MEET YOUR LEGISLATOR
Assemblyman Herb Conaway Jr., MD
New Jersey District 7
What are your
legislative
interests and top
priorities?
My top priority is
advancing health
information
technology
acquisition in physicians’ offices and also in
the hospital system so that we can make the
delivery of high-quality health care more
efficient, both in terms of cost and more
importantly, in terms of good outcomes for
patients. We know that electronic medical
records and the transfer of information does
result in better care coordination. If you
have a complicated medical condition such
as MS, where your care is spread among
several different kinds of specialists, care
becomes even more critical and a paper-based
system doesn’t manage that very well. That’s
exacerbated by the fact that you don’t have
the specialists you need within a single group,
so having electronic medical records with
the appropriate specialist and having that
available at the time that it’s needed is critical.
We’re always concerned about access to care
as another important issue. We very much
need to reform and enhance the access of
individuals who don’t have insurance or don’t
have steady access to insurance to improve
that state of affairs for them.

24 JOIN THE MOVEMENT: nationalMSsociety.org/pae

What was your experience at our MS Lobby
Day in Trenton?
I was very impressed to hear the perspectives of
people living with MS. One thing I took away
was that when we talk about housing needs
and the way in which our housing dollars are
distributed among populations of need, I was
surprised at the sort of lopsided treatment, or
the lack of balance as regards to recipients of
that aid. We need to look at that clearly to see
how we can assist people who have this disease.
The other issues were around medications and
medication access. I was not surprised to hear
they were expensive. I was surprised to hear
that it seems there’s discriminatory behavior
by insurance companies with respect to those
medications.
What legislative avenues do you think may
be available to address this issue?
Some time needs to be taken to explore
that more fully. You always think that when
medications are tiered, you have acceptable
alternatives to treat a certain condition
in the lower tiers. For blood pressure or
arthritis medications or any number of
chronic conditions where there are multiple
medications, tiering those, I suppose, makes
sense. But when you are tiering medications
where there are not a lot of alternatives, it
strikes me as not being fair. What I would want
to know is: are there acceptable alternatives
for medicines that are now in the fourth tier? If

What’s the best way for constituents to
work with you?
For myself, and I think that goes for most
legislators, the folks who are living a situation
are always going to know more about that
situation than the legislators with whom they

Legislation proposes
capping monthly drug costs
MS places a heavy burden not only on the
finances of people affected, but also on their
quality of life. The disease’s costly therapies
and medication often force people to live from
paycheck to paycheck and make impossible
choices among the things they want and need. If
this sounds familiar, we need to hear from you.
The National MS Society needs your support
to pass the Affordable Access to Prescription
Medications Act, a bill designed to give some
financial relief for people living with MS.
Of particular concern is the so-called “fourth
tier.” Four out of the 12 drugs commonly
categorized in this most expensive copayment tier are drugs for multiple sclerosis.
Drugs on this tier can cost consumers up to
eight times more than generic drugs, three
times more than preferred drugs and nearly
twice as much as nonpreferred drugs.
The Affordable Access to Prescription
Medications Act would cap monthly

may need to interact. They need to be a source
of information and bring forward suggestions
about the world as they would like to see
it, so that we can then fashion legislation to
make the change required. There’s nothing like
personal experience and living the situation to
sharpen the mind and enhance efforts to find
solutions. To the extent that solutions can be
put together and be presented to those of us
who may be called upon to enact legislation,
I can’t tell you how helpful that is. We’re
going to have to work together to think about
acquisition of drugs or things we can do to
enhance care coordination models.

Advocacy

not, the question ought to be: is it appropriate
for those medicines that don’t have reasonable
alternatives – but are absolutely necessary for
people to treat their disease and have a decent
quality of life – to be in a fourth tier, or should
they be in the first tier?

prescription drug costs; allow exemptions for
fourth-tier specialty drugs, require Medicare
to study the impact of drug cost-sharing and
potentially lower co-payments for up to 10% of
Americans with the highest prescription costs.
If you feel overwhelmed by the monthly cost
of your disease-modifying drugs, contact
the Greater Delaware Valley Chapter to
share your story with us. We want to create
profiles on everyone affected by fourth-tier
prescription drug co-payments. You can
submit your story to Jennifer Kelley at 215271-1500 or jennifer.kelley@pae.nmss.org.
Also, be sure to contact your legislators to
tell them your story and that it is necessary
to pass the Affordable Access to Prescription
Medications Act. Legislators need to realize that
the out-of-pocket expenses for fourth-tier drugs
are a burden to the hundreds of thousands of
people living with MS every day. You can find
out who represents you at www.Congress.org.
Every day, we are fighting to address the
challenges of everyone affected by MS, but we
cannot do it alone. Join the movement today!
TOLL FREE NUMBER 1 800 548 4611 25

NEWS

Lehigh, Jefferson recognized for quality care
The Greater Delaware Valley Chapter
is pleased to welcome the first
MS centers under new affiliation
guidelines with the National MS
Society.
This affiliation indicates that Thomas Jefferson
University Hospital and the MS Center of the
Lehigh Valley have met the highest standards
for comprehensive MS care.

Society staff recognizes the
MS Center of the Lehigh
Valley as an MS center
affiliate. From left to right:
Karen Mariner, Jess Dalton,
Jerry Werner, Dr. David Jones
and Tami Caesar

“It’s really
about
providing
resources for
the continuum
of multiple
sclerosis,”
said Karen
Mariner, MSS,
the chapter’s
vice president
of services and
community
outreach.

The process
has allowed
for unique
and exciting collaborations, she said, such as
a partnership between Lehigh Valley Hospital
and Good Shepherd Rehabilitation Hospital to
form the MS Center of the Lehigh Valley.
The two hospitals share many of the same
patients, said Dr. David Jones, director of the
MS Center at Lehigh Valley Hospital. When
he joined the hospital two years ago, it made

26 JOIN THE MOVEMENT: nationalMSsociety.org/pae

sense to build on the existing relationship
between the centers and, ultimately, make it
official through affiliation with the Society.
“How do we help the patient who’s limited by
fatigue or cognition or depression access the
services they need to be all they can be?” Jones
asked. “The idea was, if we could pool our
resources, we could do a better job of taking
care of the whole individual.”
Staff from Lehigh Valley and Good Shepherd
meet once a month to discuss shared patients
who may need additional medical or rehab
attention, he said.
The collaboration also has allowed them to cut
the recovery time for people experiencing MS
exacerbations. Rather than admit them first to
Lehigh Valley for steroids and later to Good
Shepherd for physical therapy, Jones and his
colleagues admit some patients directly to
Good Shepherd for both.
Jones and Jerry Werner, director of Good
Shepherd’s MS Wellness program, also have
discussed collaborating on rehabilitation
research, developing medically monitored
exercise programs at each hospital and
developing an MS boot camp to give their
patients access to all the specialists they need
in a short period of time.
Jones hopes Lehigh Valley and Good Shepherd
can act as a laboratory for creating a better
MS center.
“It’s still a work in progress,” Jones said of the
collaboration. “This is the beginning, not the
end. “

MS center
affiliation
To become affiliated with the Society, MS
centers must:
n have a leader with breadth and depth
of experience in MS, preferably an
MS fellowship
n conduct MS research
n have an MS-certified nurse
n provide social workers, counselors
and other support staff to address the
psychosocial issues related to MS
n ensure that uninsured or
underinsured patients have access to
the same specialists as patients with
private insurance or Medicare
n refer patients to specialists who
understand MS, such as neurological
physical therapists
n have an ongoing relationship and
frequent communication with the
Greater Delaware Valley Chapter
Applications are reviewed by local
MS specialists on the chapterâ&#x20AC;&#x2122;s clinical
advisory committee, as well as a
national review committee.

GADGET CORNER:
The Illustrated Guide
to Assistive Technology
and Devices: Tools and
Gadgets for Living
Independently

Gadget Corner

Learn how to build your
comprehensive care team. Check
out our comprehensive care team
Webinar series at http://main.
nationalMSsociety.org/rec

Celebrate the 20th anniversary
of the Americans with
Disabilities Act by checking
out a book that explores the
universe of assistive tools
available to help people with
disabilities remain part of the
fabric of our community.
The Illustrated Guide to
Assistive Technology and Devices, by Suzanne
Robitaille, is a practical guide that looks at
the use of assistive technologies and assistive
devices to help people with disabilities perform
functions that otherwise might be difficult or
impossible. These include mobility devices such
as walkers, wheelchairs and mobile vans; as well
as hardware, software and peripherals; talking
ATMs; and strobe light alarm systems.
Featuring 100 black-and-white photographs,
the book includes real-life examples of how
people with disabilities are successful utilizing
assistive technologies, and it presents strategies
for dealing with the emotional issues related to
using these tools.
Available at Amazon.com; $13.57.

TOLL FREE NUMBER 1 800 548 4611 27

FACE OF MS

Face of MS: Sean Taylor

The Taylor family (clockwise
from top left): Sean, Rick,
Patty and Ryan

Sean Taylor is like any other 15-year-old – he likes to hang
out with his friends; run cross country; fish and snow ski
with his family; and study hard to get good grades at Cherry
Hill East High School. He also is one of 10,000 American
children living with MS. Soon after his diagnosis five years
ago, he was inspired to ride in Bike MS: City to Shore Ride,
where he has become a celebrity. His early rides generated
news coverage, special recognition as a Flyers community
teammate and a new bike, thanks to Danzeisen and Quigley,
a Cherry Hill, N.J. sports specialty store. He and his mother,
Patty, spoke with MSConnection about their experience
with MS.

How were you diagnosed with MS?
Sean: I just started getting flares. I got wobbly
and went to the hospital.
Patty: Our first experience was when he was
7 and he had what I thought was GI virus over
the weekend, but it progressed. On Monday
morning, he fell out of bed, he wasn’t moving
one side and he started slurring his speech. I
couldn’t tell what was happening, but it was
obvious something was wrong. When we
got to the emergency room, they were giving
him aspirin, thinking he might have had a
stroke. He had a CAT scan and an MRI and the
neurologist said he was going to be all right;
he had ADEM, an inflammation in the brain
triggered by a virus. Sean was in the ICU; he
was really bad, but as the steroids kicked in,
he got better.
Three years later when he had the same sort
of symptoms – dizziness, unsteadiness – we
28 JOIN THE MOVEMENT: nationalMSsociety.org/pae

didn’t think twice about it – we took him back
to CHOP and ran another MRI and he was
diagnosed with MS. We went home and just
digested it all. In July, he had another flare on
a really hot day and ended up back in the ER,
and that’s when the neurologist said it’s time
to start treatments. He has been on Avonex
five years, and hasn’t been in the hospital since
that episode.
What have the past five years been like for
you and your family?
Sean: Pretty easy. I haven’t really had any
problems. The only thing I have to do is get
that injection every week and an MRI once a
year.
Patty: Initially we were scared. As a pediatric
nurse, I didn’t know anything about MS and
thought like the rest of the world that only
adults got MS. We were, of course, nervous
about his future. When Dr. Amy Waldman

Tell me about the ride and what it means to
you and your family?

We’re less nervous than we were at the
beginning, but during the summer, I try to
keep him cooped up in the house in the air
conditioning. He was supposed to run seven
miles today for cross country and I negotiated
that he would run it inside on the treadmill
rather than outside in the heat.

Patty: When you’re riding, you’re riding with
two groups of people: the people out purely
for a ride – the heavy duty bikers who don’t
have a connection. Then there are people
like us who are casual riders who are doing
it because we have a loved one with MS.
This ride is so great, with 25, 50 and 75-mile
options. So when we first started, we did the
25 because we weren’t quite sure how we
would do. This year we’ll do 50. My mom’s
done it the past four years. Every time we tell
somebody about it, they join our team.

What’s your attitude or philosophy about
MS?
Patty: We’ve always been so positive about
it, not wallowing in it but doing something
positive about it – like the bike ride. We’re not
letting other people do it for us; we’re getting
out and doing it on our own.
How did you get involved with City to
Shore?
Sean: My mom’s friend from work had been
riding it. One year she rode for me, and the
next year, I wanted to do it. We’ve raised
about $40,000 as a team.
Patty: He’s always said that he rides for those
with MS who can’t ride. We’re riding for other
people with MS too.

Sean: It helps to fundraise a lot and hopefully
eventually find a cure for MS. I like it a lot.

FACE OF MS

walked into the hospital room and we were
just devastated, she sat us down and said this
is not life threatening. It might be life altering,
but this is what it is. She’s been there every
step of the way.

To me, it’s overwhelming when you’re in the
midst of it with all these riders and raising all
this money going pretty much to research and
finding a cure -- or a medication that wouldn’t
have to be injected every week.
Describe what it’s like seeing your child
fight this battle – and do it so well.
Patty: We’re extremely proud of Sean and
how he’s handled himself. At 10, that’s a lot to
digest. Over the past few years, he’s just done
so much and so well and doesn’t ever let it
get him down. He doesn’t use it as an excuse
to take on less work. He does great in school,
takes honors classes, he’s very active. He just
doesn’t stop.

To make a donation to Sean or Team Taylor, visit
http://main.nationalmssociety.org/goto/seantaylor.
To ride with them or volunteer, visit MScycling.org.
TOLL FREE NUMBER 1 800 548 4611 29

Symptoms

Use it, don’t lose it
If you’re living with memory and
learning problems as a symptom of
your MS, you are not alone. About
50% of people living with MS are
affected by cognitive dysfunction.
But now there’s hope that your
memory can be improved, just by
engaging in mental activities like
reading and writing.
James Sumowski,
PhD, Kessler
Foundation,
recently published
results of a
study comparing
mental activity,
brain lesions and
memory problems
in people with
multiple sclerosis.
“What we found is that persons with higher
mental enrichment throughout their life were
actually able to withstand more disease or
brain atrophy without showing learning and
memory problems,” he said.
That means that taking part in mental
activities can protect against cognitive
problems, Sumowski added.
Further studies are needed to pinpoint
definitive techniques that could be used
to improve memory, but he recommends
reading, writing and activities that require
problem solving.

30 JOIN THE MOVEMENT: nationalMSsociety.org/pae

Reading the newspaper every morning would
be a great start. And while you’re at it, try to
complete the games in the back. Crossword
puzzles, Sudoku and word jumbles are
cognitively challenging games that can be
found in most papers.
Another very simple strategy is to practice
recalling information by quizzing yourself. For
example, if you need to make a grocery list,
write it down and read it once. Then try to
recall as much of it as you can.
“If you quiz yourself on information, you’re
much better able to remember later on than if
you simply restudied it,” Sumowski said.
He also suggests remaining employed for
as long as you can, as doing your job is
often a very cognitively challenging activity.
Provisions achieved in the Americans with
Disabilities Act require employers to make
available reasonable accommodations to help
people with MS remain in the work force.
If are not working, you should try to remain
cognitively active at your home.
To anyone who thinks that these activities
can’t help them, Sumowski says, “Why not
remain cognitively active anyway? We know
that it can’t do any harm, and it probably can
do good.”

Learn more about this
study and other memory
studies happening at the
Kessler Foundation by
listening to our podcast at
http://pae.podbean.com.

Enhance Vision’s Nemo Video
Magnifier: Three levels of magnification
(4.5X, 6X, 9X), six viewing modes, 4-inch
viewing screen, 12 volt battery charging
unit. Very light, 13 oz., easy to carry and use
anywhere. Asking $425 (cost $850 new).
Located in Havertown, Pa. Call Harry at
610-446-8798.
Hoveround Power Chair: 3 years
old, like new. Batteries and manual included.
Asking $2,000 or best offer. Located in
Philadelphia. Call Debra at 215-927-0548.
Top of the line wheelchair: Less than
a year old, used only three times. Converts
into a bed. FREE. Located in Philadelphia.
Call Linda at 215-760-3557 (evenings).
Electric hospital bed: 2001 model,
barely used. Plastic-covered mattress. FREE.
Located in Maple Shade. Call Jean at
856-662-7629.
Invacare MVT wheelchair: 6 or 7
years old, in great condition. Has 18” seat,
all black canvas material. Does not include
cushion. FREE. Located in Center City.
Call Paul at 215-295-0295 (afternoons).
Pheracycle 100 exercise bike:
Motorized exercise bike for people in
wheelchairs. Like new, used only three times.
Made to help cut down on spasticity. Asking
$2,500 O.B.O. Located in Pennsville, N.J. Call
Mike at 215-378-4712. You will need a truck
or large SUV for pickup.

Two Stannah 400 motorized stair
lifts: 4 years old. Like new. Very lightly
used and comfortable. Have wireless remote
controls, swivel levers, directional controls,
armrests, seat belt and five safety edges which
immediately stops should the stair lift meet
obstruction and folding chair. Asking $450
each (new $3,200 each), but negotiable.
Located in Burlington, N.J. Call Robin at
609-577-7813.

CLASSIFIEDS

Classifieds

Beaver Hill Condominium: Excellent
location directly across from Jenkintown
commuter train station. Wheelchair accessible,
widened doorways, strategically placed grab
bars throughout bathroom. 1 BR, 1 bath, large
den which can be used as a second bedroom,
eat-in kitchen and terrace, wooded view.
All appliances updated. Elevator building.
Many amenities including heated outdoor
pool, exercise room, social club activities,
bus service to nearby shopping malls and to
medical offices, etc. Buy or rent. Call Lydia at
Quinn & Wilson: 215-885-7600.
Image Wheelchair by Drive: Used,
in good condition. Red body. Comes with
charger and manuals. Will need a new battery.
Will take best offer. Located in Mickleton, N.J.
Call John at 856-562-1689.
Golden Guardian Champion 2
Electric Scooter: 3-4 years old, runs
great. Comes with batteries and manual.
Suited for larger person, up to 350 pounds.
Asking $100 or best offer. Located in Marlton,
N.J. Call Ron at 856-983-4381.

TOLL FREE NUMBER 1 800 548 4611 31

.
ave money

Help upase@snmss.org to reclyeiv. e

Free Matter
for the
Blind or
Handicapped

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Complete survey for
wellness funding
Just 15 minutes can
help generate funding
to expand our wellness
programs and services.

THANK YOU!
Many thanks to the hundreds
of cyclists and volunteers who
made Bike MS: PA Dutch Ride a
success in 2010 and over the past 23 years. Your
dedication to this ride has moved us ever closer
to our goal: a world free of MS.
PA Dutch
Ride 2010

We welcome feedback from current and
potential cyclists and volunteers as to how our
2011 event can be better than ever. Contact us
at MScycling@pae.nmss.org.

We’re calling on everyone
we serve to fill out
our online health assessment survey. The
aggregate data we receive will be used to
identify our wellness needs and apply for
grant funding to address the gaps we see.
Visit www.surveymonkey.com/s/
GDVhealthsurvey (don’t forget the “s”)
to complete your survey today!